Description:

Assess the quantity and ease of locating the source(s) of the information.
To answer this question, one should know who is responsible for the content
(i.e., who provided the content). For example, the material might mention
a journal article or an expert in the field, or there might be a reference
list at the end with a list of journal articles or books.

Scoring:

LOW: Information about the source of the information
is not provided.

MID: The material does not have many references,
or it is difficult to determine where the information came from.

HIGH: There are numerous references cited in the
material that are easy to find or a reference list.

Examples:

LOW: A webpage with information about treatments
for Fragile X that does not include a reference list.

MID: A webpage with information about treatments
for Fragile X that has many sub-topics, but only one reference list
at the end (making it difficult to know which information came from
which source).

HIGH: A webpage with information about treatments
for Fragile X that has citations within the webpage and a reference
list at the end.

Points To Consider:

Government agencies have many
people who help review materials before they are shared with the public.
The information may not be the most current because of the time it takes
for the many rounds of review.

Parent-sponsored groups may provide
a wide range of information that is targeted mainly for parents. These
groups may differ in how they assess the quality of the information they
include in materials.

Universities try to include peer-reviewed
research (meaning it has been reviewed by noted experts) using well-accepted
scientific methods. The quality of a study depends on the methods used
by researchers. Therefore, study results can be difficult to interpret
if one does not know the strengths and weaknesses of the study methods.

Description:

Assess whether the individual or group that wrote or supports the material
has experience with the condition and is well connected with the community
of people who have the condition. Depending on the content and purpose of
the material, it can be written or supported by a parent or professional
familiar with the condition.

Scoring:

LOW: There are no credentials listed and no background
information included; or the author has no experience with the condition.

MID: The authors have little experience with the
condition.

HIGH: The authors have a lot of experience with the
condition, are well respected in the community, and are well respected
by peers.

Examples:

LOW: Material explaining how Duchenne Muscular Dystrophy
(DMD) is passed on in families is written by a scientist who studies
earthquakes and has no experience with DMD.

MID: Material explaining how DMD is passed on in
families is written by a parent who has a basic understanding of genetics.

HIGH: Material explaining how DMD is passed on in
families written by a research team that has been studying DMD for 20
years.

Points To Consider:

An individual with expertise may be a parent or a professional. However,
one should not automatically dismiss an individual or group who has little
experience because they may be motivated to learn quickly and become “experts”
for the patients with whom they work.

Description:

Assess whether the information discusses generally accepted facts about
the condition, which could be scientific, psychosocial, or management related.
If there is new information, the source and date should be provided.

NOTE: If you can find only one source of information about a particular
topic, it cannot be scored for consistency, because there is nothing to
compare it to.

Scoring:

LOW: The information presented is clearly wrong given
the current state of the science and expert consensus.

MID: The information is different from that in other
resources and does not provide details about the source of the conflicting
information.

HIGH: The information is supported by multiple organizations,
publications, and experts. Information that is new/different than other
sources contains study information.

No other materials: No other materials are known to exist,
so a comparison is not possible.

Examples:

LOW: Material explaining the history of Fragile X
does not include information about the use of medications.

MID: Material explaining the history of Fragile X
includes information about a pharmacologic treatment that has not yet
been reported in journal articles.

HIGH: Material explaining the history of Fragile
X includes information about treatments that are supported by several
research studies.

Points To Consider:

If you are unfamiliar with the subject, you may not be able to judge this
element. If you are familiar with the subject and the information is unique
to this educational material, you may wish to check on its accuracy with
an expert in the field.

Description:

The basis for information can be evaluated in the following 3 ways:

(1) The type of data -- whether authors used anecdotal data (meaning
something was observed in a few patients) or expert-reviewed data,

(2) The type of research design, and

(3) The relevance of the population studied by researchers to the
audience for the material.

NOTE: If you can find only one source of information about a particular
topic, it cannot be scored for consistency, because there is nothing to
compare it to.

Scoring:

LOW: The material provides no information about the
basis of the data, type of research design, or is not relevant to the
audience.

MID: The basis of the material is good, but the information
provided is not relevant to me or my child.

HIGH: The information comes from a strong basis,
e.g., a peer-reviewed, published study that is relevant to me or my
child.

Examples:

LOW: Material about the prevalence of Fragile X includes
only an estimate from one genetic clinic’s patient population.

MID: Material about the prevalence of Fragile X includes
only information about boys (and I am seeking information about the
prevalence in girls).

HIGH: Material explaining the history of Fragile
X includes information about treatments that are supported by several
research studies.

Points To Consider:

If no traditional research has been published, personal experience or anecdotal
evidence can serve as quality information. An example would be a parent
writing about ways to deal emotionally with a child’s diagnosis, and that
is stated in the article.

Description:

Assess whether the group that endorses or provides financial support for
the creation of the material has an obvious conflict of interest, financial
interest, or bias with the information provided. Advertisements should be
labeled as such.
NOTE: This element will be more or less relevant depending on the information
included in the material. For example, treatment information may be suspect
if it is produced by a company selling that treatment. Information about
the basic science of the condition, provided by the same company, may be
less questionable.

Scoring:

LOW: No information about the funding or sponsoring
group is provided.

MID: The information reflects the group’s bias, or
the group does not have much experience with the condition.

HIGH: The sponsor has a lot of experience with the
condition and may be biased, but the material does not reflect that
bias. The information does not try to sell a product or point of view.

Examples:

LOW: Material about treatment of DMD supports one
type of treatment, but does not list who makes that treatment or whether
it is the same company that wrote the material.

MID: Material about the treatment of DMD supports
one type of treatment, but the company that makes the treatment sponsored
the material and does not list other treatments.

HIGH: Material about the treatment of DMD supports
one type of treatment, but the company that makes the treatment has
done clinical trials comparing the treatment to other treatments, and
the supported treatment has been shown to be better than the others.

Points To Consider:

The importance of this element will depend on the type of information available.
For example, a company that is providing a treatment may publish slanted
or incomplete information about the types of treatment available, but they
may publish unbiased information about the basic science of the condition.
Some examples of types of sponsors or funding groups are:

Government: Government agencies make careful decisions about which
groups to work with, so the majority of government sponsored information
has been carefully reviewed and is reliable.

Private business: Businesses make decisions about whom they will work
with and why. Businesses usually offer money to develop a project with
a partner, but it may be difficult to assess the true nature of the
partnership.

Non-profit organization: A non-profit organization may be very invested
in producing educational materials, but it may not be clear why.

Description:

Review the date when the material was created or when the content was last updated. You may need to look at other sources to see if important, new information about the condition has been published since the material you are reviewing was last updated.

Scoring:

LOW: The information is clearly out of date.

MID: The information is not clearly out of date, but certain parts of it do not reflect updated information.

HIGH: Material explaining Fragile X premutation carriers that includes information about both FXTAS and FXPOI.

Points To Consider:

If no date is provided, the material may be general and provide background information only. It is also possible that newer information about the condition is known but is not included. Therefore, material without a date should be used only with caution.

It can take a long time before new information about rare disorders is available, so it may not be a problem if the material was created more than five years ago. However, there could also be newer information available that is not included.